Caring for Kelly Blog

Hi Everyone,

Sorry I have not updated in a while, things have been very busy.  We are starting to see some of the side effects of the radiation that Kelly received.  I took her to the eye doc the other day and Kelly is completely blind in her left eye.  She has a “damaged visual cortex, secondary to the radiation”.  That’s what the official diagnosis was.  She does see some shadows and can see out of the side, but her sight will not return and we are unsure if it will get any worse.  She is also near-sided in her right eye so Kell got some really cute glasses.  Now her and Molly can be twins.  This really bothered Gary, it did not even phase me.  As long as she has one good eye that she can see out of.  I did ask if she will be able to drive when she gets older and the doc said yes but may have some restrictions.  When you but things in perspective this is minor - to me anyway.  We also made our first trip to the endocrinologist, Kelly’s TSH level was high.  The endro doc put her on synthroid, just like her momma.  The positive side to this is that because her TSH is high that indicated that her pituitary glad is working, it’s sending TSH to the thyroid, the thyroid is not taking it.  This is a sign of a Hypothyroid.  This could be inherited from me or from the radiation - does it really matter how?  She takes the pill every morning like a champ - we take it together.  We also went over what most kids who have had radiation to the head, neck and spine usually experience.  In a nutshell, we will most likely be really good friends with our endro doc.  Nothing that can’t be controlled, and we will deal with if and when they arise.  Kelly is in school and doing well.  Everyone in the school knows her and when we go around town to shop she almost always sees someone who yells “HI KELLY”.  It always makes her smile and me too.  She is kind of the town celebrity, although I wish for different reasons. It could be worse, she could be known around town for being a tramp - lol.  She is developing more social skills, she missed an entire year because of the treatment.  Kelly’s class is having an “graduation” at the end of the school year and every child has a part.  The theme being what they want to be when they grow up.  I will brag a little bit here, Kelly said she wanted to be “just like her mom”.  So for her part Kelly will dress like a mom and recite a couple of lines about what a mom does.  I’m excited for her to do this.  This will be huge because she will have to get up in front of everyone to do this.

We started another chemo last Tuesday, Temodar.  This will help in fighting the tumors from a different direction in addition to the Avastin/Irinotecan. It’s an oral chemo that I can give her at home for 5 days every 28 days.  Very little side effects, but the little peach fuzz she had started growing back is now gone, oh-well small price to pay. 

The mayor of Willow Springs contacted me the other day.  He wanted to let me know that the village is having a classic car show in August with some of the proceeds going to Kelly’s fund.  I thought that was very nice of him and the village.  I’ll attach the link to the village to view the details, try and make it out if you can there will be a booth for Kelly.

We are far from being out of the woods, but are headed in the right direction.  We go day by day some days hour by hour.  I ask for your continued prayers and support for my little girl battling this horrible monster and being so brave while doing it.  She never asks why and that in itself makes me so proud of her.  It’s wasted energy to feel sorry for yourself and that way we have more energy to battle the monster.  The only thing she ever talks about that I have a hard time dealing with is when she talks about “remember mom when I used to walk”  I look right at her and say “Kelly you can still walk, you just need to work harder on your balance”  I know what she is talking about, but I told her to say “remember mom when so and so happened.  Not to use the surgery, radiation, chemo,weakness as a crutch or a piece marker in time.  I feel like that does nothing but give excuses.  She will walk again, she is already starting and doing very well in short distances.  Just like a baby when they begin to learn to walk, she has to re-lean everything again.  I see her at physical therapy and my hearts breaks and at the same time I could not be prouder of her.  She works so hard, I can actually feel it.  I watch her struggle with different muscles and different activities that the PT uses.  She refuses to give up - no matter how tired or hard the task is, this kid will not give up until she has completed what was needed to be completed.  The look on her face, the look of accomplishment that she gets for herself.  We all could learn so much from her, she’s amazing, if we only had half her drive, half her determination. 

 I ask that everyone continue to pray and to also thank God for what Kelly has accomplished so far.  I think sometimes we lose sight of what He has already granted us and we need to remind ourselves to be thankful for Kelly and for everything you have in your life.  I can say I personally have learned so much, just by being Kelly’s mom - I feel honored.  I’ll end on this note - I am also grateful to be Molly’s mom, that little stinker.  If she was not so cute, I would have hung her by her toenails by now. Just tonight after I gave her a bath, she snuck out the back door and was picking my flowers that I just planted in the mud with no shoes or socks on just pajama bottoms and totally covered in mud.  She said, mom I pick these for you for mudders day cuz I love you.  How do you get mad at that, you don’t she just goes back in the bathtub and I go back to Home Depot for more flowers.

One more thing - the web-site is back up and running.  I will no longer send out e-mails, you can just go to the web site to check for updates.  I’ll try to update as often as possible, at least every two weeks unless something major happens, like Kelly gets cured next week.

Remember Failure is not an Option

I CHOOSE to be positive

I CHOOSE to push on

I CHOOSE to fight this monster with my daughter

I CHOOSE not to feel sorry for myself

I CHOOSE to have my faith

I CHOOSE for this journey to make my family stronger

I CHOOSE to believe Kelly will endure

Ellen